When I was seen at Mayo Clinic, I felt sure that I would get a definitive answer to whatever was “wrong” with me.Continue reading
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I have not been doing that well lately, and I am really lucky to have an amazing support network of family and friends to lean on. However, I realize that when I call my friends during a psychotic breakdown, it puts a lot of pressure on them and they don’t know what to say. I’m writing this article mostly for myself and for my friends, but also for anyone who may be at a loss for how to help a person with psychosis.
Sometimes it’s hard to differentiate what symptoms are being caused by which disorder, or even what’s a hallucination, what’s a delusion, and what’s paranoia. Actually, let’s talk about that for a second. Hallucinations, delusions, and paranoia are all symptoms I experience as a result of schizoaffective disorder. Hallucinations are hearing, seeing, and feeling things that are not there. (Some people also smell and taste things that are not there, but I do not experience this.) I often feel like bugs are crawling on me, and I can see the bugs out of the corners of my eyes. Sometimes I see cameras or other electronic surveillance devices where there is nothing. I often hear voices, or a single voice named Henry (He is a snake who lives inside my body.) insulting me, saying that I’m promiscuous, telling me I’ve done terrible things or that terrible things will happen because of me, and telling me to hurt myself or others.
Delusions are fixed, false beliefs that do not line up with reality. I have a paranoid delusion that a man who hurt me when I was a little girl is stalking me via electronic surveillance devices and a network of spies. As you’re reading this, you probably think that sounds far-fetched. I do not. Recently, this delusion has furthered, and I’m convinced that my world is all a simulation controlled by the man who hurt me (I refer to him as the Angel Man.) and that I have to hurt myself badly enough to wake up and “save the children,” so they don’t get hurt like I did. I don’t know who or where these children are, only that they’re in danger, and I was put in the simulation to save them. As I’m writing this, I realize that it makes absolutely no sense. That’s why it’s a delusion. It doesn’t line up with reality.
Paranoia is a little harder to explain. In a lot of ways it’s like anxiety, but times a million. It’s a sense of dread and fear. For me, it centers around the delusion that I’m being stalked. If I hear a weird noise outside, or one of my dogs starts barking at nothing, I immediately start worrying that there’s a dangerous person in my yard who’s going to rape and murder me.
Now that we’ve covered the basics, let’s talk about what to do in a crisis. It’s always a good idea to ask me if I’ve taken my medicine. I almost always remember to take it, but it doesn’t hurt to check just in case.
One thing that really doesn’t help is telling me that whatever I’m hearing, seeing, or thinking isn’t real. It’s very real to me, and it’s just frustrating for everyone to get into an argument about what’s real and what’s not. If you tell me that something isn’t real (the children I have to save, for example), I will get frustrated and tell you that you’re not real, and there’s pretty much nothing you can do to convince me otherwise. (My dad actually won that argument by showing me a list he made at a self-improvement class in 1998. It was a list of things that bothered him, and number sixteen was not getting enough “Daddy and Doodle” time. He’s Daddy. I’m Doodle.) Anyway, you can ask me what evidence I have that I have to save the children or that I’m in a simulation, or of whatever’s bothering me. I might get mad at you for poking holes in my delusion, but in the long run, you’re helping me, and once I calm down, I won’t be mad anymore.
A lot of my hallucinations and delusions are trauma-related. These are the most upsetting ones because the combination of PTSD and psychosis makes me feel like I am reliving the trauma. I will often say, “I can feel him touching me,” and proceed to beat myself in the face. Obviously, this doesn’t help anything. It’s totally okay to grab my hands and stop me from hitting myself. I’m not always okay with physical contact when I’m that upset, especially if I feel like my abusers are touching me, but if my options are: not hurt myself or have someone touch me when I don’t want to be touched, I’ll sit on my hands or hold yours. Sometimes, I might want a hug, but I’ll probably just want to pet your dog unless you’re my parents or Christin (in which case, I might want to pet your cats). It helps to hear, “He’s not here right now,” or “You’re safe with me.” Sometimes, that isn’t enough, and I get scared that an abuser is going to attack me immediately and that I will have to physically overpower him. Telling me that you’ll protect me or help me protect myself helps, and it really doesn’t matter if you could fight a scary man because there’s no actual danger. Physical contact can be a huge help. It’s grounding and reassuring, but please do not force it on me if I tell you I’m not okay with it. I know that a lot of people’s first instinct is to hug someone when they’re upset, but it doesn’t always help me.
Sometimes, I get so delusional that I don’t make sense. One thing that many people on the schizophrenic spectrum struggle with is disorganized speech and issues with word-finding. I don’t think this affects me, but I can get so upset that I have trouble speaking, and I’ll forget what I’m saying and trail off in the middle of a sentence. (Speech class, here I come!) When I’m really delusional, I’ll forget that not everyone knows what I’m talking about. Today, I went over to my best friend Colette’s house because I didn’t want to be home by myself, and I asked her why we were in the jungle. I was very confused and did not know where I was. I told her that we were in a simulation, and started rambling about how I needed to save the children. She respectfully let me finish (always a good thing to do), and then said, “I don’t know what you’re talking about.” That’s a perfectly acceptable thing to say to me when I’m not making sense. You can ask me to elaborate if you need/want to know more about the delusion, or you can just let it go. Either one is fine, and knowing more about the delusion probably won’t help anything unless I’m telling you I need to harm myself.
I have prescription sedatives for when things get really bad. They calm the voices down, stop me from hyperventilating, and sometimes put me to sleep. These are all good things. The other night, I saw a story on the news about a one-year-old boy whose father killed him with the car in the family’s driveway. It was an accidental death, but I was already delusional and thinking about saving the children, and I immediately jumped to the conclusion that the child died because of me and started to cry. My dad tried to get me to take a sedative, but I wouldn’t because I “needed to be awake to save the children.” The more he encouraged me to take it, the more I thought he was trying to poison me. Finally he told me that I couldn’t save the children if I didn’t calm down, and that got me to take the medicine, and I was okay. It is perfectly fine to indulge a delusion if it’s going to keep me safe. That is so, so much more productive than telling me it’s not real.
Of course, if things get really bad and I can’t calm down or I’m becoming a danger to myself (or others, not that that’s likely), it’s in everyone’s best interest to call my parents.
The main thing is knowing that someone is here for me, which I know all of my friends and family most definitely are. I appreciate all of you who’ve sat through the hysterical late-night phone calls, who’ve held me while I try to stop the voices, and who listen to me and love me in spite of everything. You’re all amazing, and I am lucky to have you in my life.
This is not just a story. This is my story. This is relaxation, transcending discomfort and becoming one with the body, the vessel that will propel me towards my dreams, my goals, the only thing I will own all my life, that no man can ever take away from me no matter how hard he tries. This is violence and diamond-studded teeth sinking into jagged fingers. This is love and softness, holding hands on the beach and peach-blushed, sunburned skin skin. This is housekeeping, picking up trash on the floor of my heart and putting everything back in its place so that I can heal, and that the garden of my heart will flourish. This is admitting, accepting, embracing, and screaming that I am not broken, that I have always been as cratered and glowing as the moon herself. This is no bra and stiff sandals on the way love in home, all the way to body love and letting her in. This is amazement and feminine magic, hair out of place, and being seen, loved, and deemed beautiful without makeup. This is cheap lipstick and men’s deodorant, all the random beads I strung together the year it happened to me and all the little girls in the world, and how their discordance hummed and throbbed and glowed with all the magic of the first time I saw a firefly at summer camp. This is healing, and loving, and letting myself grow. This is admitting, accepting, enjoying, annd loving that I have a body and knowing that I am.
I was thirteen years old when I started harming myself. I was being bullied in school and starting to experience depressive symptoms, although I didn’t recognize either of these occurrences for what they actually were. I kept quiet about everything that was going on, silently berated myself for not being able “just get over it,” and broke my skin open with increasing frequency.
At eighteen, I am a newly minted adult, but still dealing with the detrimental habit that characterized my high school days. Over the past five years, I’ve harmed myself with everything imaginable: my fingernails, my teeth, broken bits of plastic and metal, sewing needles, thumbtacks, knives, and razor blades. This is only a partial list. In fact, it is merely a list of things I’ve used to cut myself. The list of things I’ve used to hurt myself is much longer, but my weapon of choice was Zach.
I met Zach during my sophomore year of high school. That was the year I missed a quarter of school to go to residential treatment for the first time. When I came home, I took all but two of my classes online so that my parents could keep a closer eye on me. I was isolated at home and having a difficult time making friends. Zach was a member of my lab group in chemistry class. He had all the typical interests of an awkward high school underclassman: anime, memes, webcomics, and death metal. He paid attention to me, and that was all it took for me to desperately want his attention. Suddenly I, too loved death metal and webcomics. It was easy to parrot the all-male lab groups idioms and inside jokes. Sometimes they would try to throw erasers and bits of paper down my cleavage, but I forgave them. Sometimes they would grab me from behind, sneaking their bodies against mine, but I forgave them. That’s what friends do. Our chemistry station in the corner of the classroom was an island where courtesy and self-respect did not exist. When Zach flirted with me and accused me of reciprocating, I did not deny it, although to do so would have been to tell the truth. Instead, I dismissed the notion with a laugh and the wave of my hand.
Zach and I parted ways during our junior year due to a coincidence of class schedules. We were reunited during our senior year in math and physics classes. Perhaps the fact that we always had science classes together was a sign that our relationship needed more logic, more analysis. Indeed, there is no place for fantastic storytelling about what happened between us. If only I had followed the scientific method with him–this is my desired outcome; here is how I will work towards it. I imagine carefully measuring my time and emotions to create the desired chemical reaction.
Yet another variable in my grand experiment was Paige. In actuality, Paige is just another girl who was born twenty years too late and and spent her high school years yearning to experience the heyday of grunge. But in my mind, she defies description. Paige was my primary tormentor in middle school, and although nearly four years had passed, the memory of her meanness still stung. My eating disorder had robbed me of all self-esteem, and I believed that Paige was an all-around better person than I could ever hope to be. I took her proficiency in math and science to mean that she was smarter than I am, ignoring the fact that I was acing advanced English, getting published in magazines, and editing my school’s literary magazine. Paige dressed the way I wanted to dress; she was allowed by her parents to pierce her nose; she drove a really cool car. She also had a close group of friends that I walked past every day during the lunch period on my way to spend it alone in my car sipping diet energy drinks. I was also aware that Paige had anorexia. In my jealousy and disorder, I did not feel bad for her, much less think of supporting her. Instead, I obsessed over the fact that she was much thinner than I ever believed myself to have been, and hated myself for every calorie that passed my lips.
As senior year wore on, I became better friends with Zach. I began to confide in him about my eating disorder and self-injury, and he told me about his own mental health issues. We often talked about relationships, and our conversations were laced with flirty quips and sexual innuendo. He called me beautiful. I begged him to say it again.
I was almost relieved when Zach and Paige started dating. Although I desperately wanted a relationship, I was ill-equipped to actually have one, and I was anxious at the thought of intimacy–emotional and otherwise. But even though Zach claimed to be devoted to Paige, he continued to flirt with me and describe his sexual fantasies, which often involved me.
High school can be a time of sexual growth and exploration, but it was very much the opposite for me. While my peers were charting new territories on each other’s anatomies, I could barely face my naked form in the mirror, much less stomach the thought of someone else seeing my body. Because of this, I felt repulsed and fascinated by the details of Zach’s sexuality. When he told me about what he did with Paige, I felt jealous; when he told me what he wanted to do with me, I felt powerless and degraded. Still, I encouraged him to continue. I believed I was taking something away from Paige by basking in her boyfriend’s attention.
Things came to a head in December when Zach and I found ourselves alone in his house. He told me that things were not going well between him and Paige. I am a reasonably intelligent individual, and I saw were this was going. Immediately, I felt anxious. I was not ready for intimacy. I knew I wanted Zach’s attention, but I also knew I was not attracted to him. I followed him into the bedroom anyway.
I left Zach’s house shaking and panicky, feeling like my eyes were too big for my face. He hadn’t forced me into anything, but he didn’t need to. I was insecure and scared to say no. I let him do and say degrading things to me, and I blamed myself for not using my voice. He called me a slut, and I believed him.
This pattern of behavior continued for the next few weeks. I was constantly cutting myself in an attempt to regain some sense of control over my body. Although my actions were making me miserable, I continued to repeat them, driven by the thought of “taking” Zach away from Paige. I wanted to beat her at something–even this.
A few days before winter break was over, Zach came to my house saying that we needed to talk. He told me that we couldn’t be together anymore because he and Paige had made up and were back together. His exact words were, “I could love you, but I do love her.” A true scientist would have stopped there, declared the experiment over, results inconclusive. Instead I envisioned a creative solution.
I spent the next six months in IOP working on my recovery, and I gave up self-harm for all of that time. Well, to be specific, I gave up cutting. I started smoking, and when things got tough, I turned to Zach.
By now it was summer, and Paige had broken up with Zach, who was devastated, right after graduation. I believed I had the power to make him feel better, so I moved in on him and we continued our old pattern of behavior. I ignored his violent and misogynistic tendencies, and he ignored my constant put-downs and comparisons. He never asked why my thighs were perennially covered in band-aids, scabs, and scars, which only made me seek his attention more desperately. I was determined to own this boy, no matter the cost. I still felt inadequate compared to Paige, believing that the only reason Zach now saw me as good enough was because Paige no longer wanted him.
Ultimately, I had a conversation with Zach about physical boundaries, and he deemed me unprepared for a “real” relationship because I wasn’t ready for sex. His hypothesis was true, although his reasoning was faulty. Our attempts at being “just friends” failed dismally; we found ourselves in the same cycle.
Finally, I knew it was up to me to make a change. I realized Zach had never treated me with the respect I deserved. I respected myself enough not to let another person harm me emotionally or physically, so I deleted Zach’s number and told him not to contact me. He upheld his end of the bargain, and I am no longer able to use Zach as a form of self-harm.
Unfortunately, now that I don’t have Zach or a pack of Marlboros, my dreams shimmer with visions of razor blades. Self-harm is a demon with many masks. Although I respect myself enough not to let Zach continue hurting me, I struggle with the self-respect I need to stop hurting myself. Self-destruction is embroidered into the fabric of my nature, but the next time I have a pair of scissors, I won’t use them on myself. Instead, I will use them to snip the threads of self-harm and self-destruction right out of my life.
Today marks my third week in treatment. My experiences here have been tumultuous and eye-opening. For so long, I have been disconnected from my emotions and unaware of what I have been feeling. Suddenly I’m being asked to explore what’s really going on inside my head, and it’s pretty scary. I’m not sure I want to know everything about myself. I’m a shy person, and I feel as though I’m being asked to get to know a stranger intimately. Who is this person who claims to be Katherine? What’s under the Warden’s influence? The question is always: who am I without my eating disorder?
There have been a lot of surprises as I have explored the inner mechanisms of my mind. Although I feel more connected to myself, there is tension. As I have been trying to figure out what it really means to be me, I have been arguing with myself. It’s difficult to separate my voice from that of the Warden. I’m not sure what’s me and what’s not. There’s a lot going on in my head, and some days I can’t seem to make sense of any of it.
Today during process group, which open-ended group therapy, we had a powerful conversation about holding on to things that don’t work. We all have coping skills. Some are good ones, or adaptive coping skills, and others are bad, or maladaptive coping skills. My maladaptive coping skills include self-harm and eating disorder behaviors (such as restricting my food intake and purging), as well as engaging in unhealthy relationships, taking drugs, and smoking. I know for a fact that they don’t work. So why am I still holding onto them, grieving for the ones I’ve stopped using, and trying to find ways to incorporate them into my recovery? A full recovery does not involve the regular use of maladaptive coping skills. I can’t be recovered but still purge. I can’t love myself but still seek approval from people who treat me badly. I can’t commit to taking care of my body but still smoke.
It’s time to throw away the maladaptive coping skills. It’s time to acknowledge that they don’t define me and that I am worth more than harming my body and psyche. I am scared to find out what’s driving me to hurt myself and what’s under years of self-loathing. But I am excited to find healthier ways to cope with depression and anxiety, and to find a way to feel better. I look forward to what comes next.
One of my favorite groups here is “Creative Arts,” which is basically art therapy. It’s led by Marissa, a wonderful, kind therapist who always comes up with inventive ideas for activities. Yesterday she did not disappoint.
When she said we were making hate projects, I admit I was a little confused. Treatment is about learning to love yourself, not wallowing in the self-loathing that got you there in the first place. We were given magazines, glue, and construction paper and told to make collages representing everything our eating disorders, which are personified as Ed (or in my case, the Warden) tell us about ourselves. I tried to tap into what the Warden tells me, but much to my surprise, it was hard to identify exactly what he says to me on a daily basis. In the past, I would say that this is because those negative messages are so deeply ingrained in me that I mistake them for fact, but today, I am happy to report that the Warden’s voice is growing distant and hard to hear. I made a collage of the beach and wrote, “The world is an ocean and I am an oil spill.” By this I meant that I feel worthless and small compared to a world of seemingly happy, functional people. I meant that I feel defective.
After we finished our collages, Marissa brought us outside and had us do something pretty surprising. She instructed us to rip up our collages. The group was hesitant, and we went one by one. As each person tore off something negative from the collage, she said something positive to reframe the negative thought. When it was my turn, I ripped my collage tentatively and was slow to come up with affirmations or reframes. Marissa asked me what feelings I associated with being an oil spill. I said I felt worthless, stupid, unimportant, and unlovable. As I shredded my collage, I found myself saying, “I matter. I’m important. People care about me. People do love me. My parents love me and God loves me. I am allowed to love myself. It’s not selfish. I am intelligent. I am a talented writer. I matter.”
After I was finished, my negative thoughts, which I had so carefully constructed, were laying beside me in a little pile. It was pretty exciting to see that I have the power to destroy negativity and unwanted thoughts. I don’t have to listen to the Warden when he tells me I’m worthless and unable to recover. Instead, I will listen to the genuine Katherine who believes in herself and knows she’s worth recovery.
When I’m feeling unproductive and ready to make a change, I make to-do lists. I start out earnestly, thinking about the things I want to accomplish during the day, then I get overzealous, and before long, everything I intend to accomplish in my entire life is scribbled on the six lines my planner gives me for the day. By noon, I have to reevaluate my plans because there is simply not enough time. By bedtime, unmade phone calls, my messy bedroom, undone homework, and the fishbowl that still needs cleaning are weighing on me, and I feel like a failure.
Instead of overwhelming to-do lists, I propose a gentler idea: a self-love letter. Every night before I go to bed, I leave myself a note on the mirror encouraging me to do the essential things I need to get done, some ideas to entertain myself before going on the internet for hours on end, and a bit of positivity. It goes something like this:
Good morning! Today is Sunday, October 5th. It’s really important that you reschedule that doctor’s appointment today and turn in that essay. If you get bored today, think about going to the library, taking one of the dogs for a walk, or doing some writing. Don’t forget that you have work at 10:30 tomorrow, and you also told Colette you’d give her a ride to the bookstore at 5:00. If you start feeling sad, just remember that your family loves you and you have that concert to look forward to on the 18th. One great thing about you is your smile. Have an awesome day!
You can customize this self-love letter any way you’d like. For me, the essentials of it are no more than three “to-do” items (turning in my essay and rescheduling the doctor’s appointment in the example above), a few suggestions of ways to fill up my day, and an affirmation. The ideas of things with which to fill my day was especially important when I was home from school but hadn’t started treatment yet. I found myself getting bored, which led to feeling sorry for myself, which led to feeling depressed. Keeping myself busy became essential. You might want to add a space for something you’re grateful for, a long-term goal you’re working towards, or a way you’re going to reward yourself for getting through the day. Keep it open-ended and positive, and you’re bound to have a better day.
Yesterday, at the beginning of my second week in treatment, Claire, a former patient of my treatment center came to talk to us about sustaining recovery in the real world. As she shared her story with us, I began to notice some common themes: always putting others before herself but never feeling like she’d done enough, numbing or “stuffing” of emotions, shutting out friends and family, and intense body hatred and shame. I listened to Claire tell a story that sounded very similar to mine, and I was eager for the part where she would reveal how she conquered her personal Warden, how she banished the eating disorder voice from her head. I was dismayed to hear that she hadn’t. Claire calmly explained to us that she still experiences eating disorder thoughts and urges. What had changed was that she deals with them in a completely different way than she has in the past.
This left me stumped and feeling a bit underwhelmed. What’s the point of all the hard work I’m doing in treatment if Ill never be free of the obsessive, destructive eating disorder thoughts that make me miserable? Claire went on to talk about the coping skills that work for her and repeatedly mentioned reframing as one of them.
Reframing is a way of thinking that involves acknowledging that you’re having a negative thought and trying to replace it with a more positive one. For example, if I have to write a ten page paper on a subject I don’t understand, I might think, “I’m going to fail this assignment because I am too stupid to grasp the concept.” To reframe this thought, I must first acknowledge that it is negative. During my senior year of high school, I spent several months in an intensive outpatient program where I learned to simply say, “I am having the thought that I am stupid.” This takes some of the power away from the thought and puts some distance between you and it, inviting you to examine whether the thought is really true.
The next step is to come up with a positive or neutral statement to counter your original thought. It doesn’t have to be something so over-the-top that you’d never believe it. I wouldn’t tell myself, “I will get an A+ on this assignment because I am smarter than my professor.” Rather, a good way to reframe the negative thought would be to tell myself, “I may not understand the material now, but I have the study skills to learn it, and I am a good enough writer to make this work.”
As Claire continued with her story, telling us how she reframes her thoughts on a daily basis, I realized that I often reframe my own thoughts without meaning to. The way Claire talked about reframing made me want to incorporate it into my own life more often. I imagined having as many positive thoughts as I do negative ones. That’s a lot of positivity! Someday, Claire and I, and all the other women with me in treatment will be free of disordered thoughts and urges. But in the meantime, recovery is having the thoughts but responding to them differently. To be in recovery I will still hear what my disorder tells me, but I will choose not to believe its lies, and not engage in disordered behaviors. Someday, I will be fully recovered. Until then, I will reframe, reframe, and reframe again.